Monthly Archives: August 2013

RA & The Weather

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Do you sometimes feel like a human barometer? Join the club. Most people with Rheumatoid Disease claim that they can tell by increased pain in their joints that the weather is about to change. Scientific studies have long debated if this is true or not, but get a group of patients that have osteoarthritis or arthritis symptoms under the umbrella of autoimmune disease together and you are going to hear a resounding confirmation that we do indeed tend to be human barometers that can out-forecast the meteorologist on the local televised news!

I’ve experienced this phenomenon myself. I live in the southeastern region of Oklahoma. We have relatively mild winters but are quite prone to getting thunderstorms either from weather fronts pushing into the region or due to day time heating that causes pop up storms. I learned that changing weather for poor conditions usually effects my joints within 24 hours of the weather change. It’s only been more recently, that I’ve also been able to attribute humidity to also causing problems with my joints.

I was glad to see an article in September/October 2013 issue of Arthritis today which discussed weather and arthritis under an article called, “Climate Therapy”. In the article, studies have shown that arthritis “patients felt worse both when the barometric pressure was high and humidity was low and vice- versa – mimicking as a storm comes and goes”. In addition, researches have found that ” a 10-degree drop in temperature also corresponds with an increase in joint pain, as does an increase in barometric pressure.”  I have noticed the same thing here in Oklahoma. Many times our temperatures here in August will soar into the high 90’s and low 100’s then fall into the 70’s during the night. I kept thinking, why do I still have this storm-like pain when it’s so dang hot? Now I know. It’s the temperature change and barometric shift that occurs without a storm.

I was intrigued by this information because the nurse in me is a science geek and the rheumatoid patient was feeling rather victorious and validated that I’m not really crazy; there is a pattern to weather and joint pain. In checking resources on the internet, many of the newer studies are looking at humidity factors. Rather than quote a bunch of different studies, I’ll just summarize that most found that rheumatoid patients and fibromyalgia patients were more likely to experience an increase in pain with a increase in humidity. Several studies indicated that fibromyalgia patients are more sensitive to humidity. I have experienced this also. We certainly have some very humid days living here in tornado alley and on those high humidity days my fibro pain has been more pronounced that the rheumatoid pain. For those of us who have both diseases, we learn to differentiate the type of pain both diseases cause. For me rheumatoid pain is deeper and sometimes causes my joints to itch, burn, or just have that deep, dull ache. Fibro pain is more superficial, meaning it’s just a few layers deep more like a burn from scalding water or from a very deep sunburn. At least that is how I tell them apart. You may be different.

So, the next time that you feel an increase in pain take a look at the skies. You might just be able to predict these episodes and with prediction we can alter our actions for the day to allow more rest, and perhaps adjustment of medication can help to combat Mother Nature’s effect on our joints.

Quoted material is from Arthritis Today Sept/Oct 2013 issue, page 26. Article: Climate Therapy by Dr. Esther M. Sternberg.

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RA: Body, Mind, Spirit

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RA ravages our body but often we are the only ones who “see” it. I saw a photo on FB last week illustrating invisible illness by using a potato. The potato looks ordinary on the outside like an average potato, but in the second photo, it has been sliced in half and you can see the decaying structure on the inside evidenced by a large black hollow spot in the middle with nooks and crags leading to the edges of it’s ordinariness on the outside. People with RA are like that potato. We look fine on the outside while inside we are ill.  We feel bad but we don’t look that bad. Sometimes it takes many years of internal joint destruction and assault on our organs for us to “look” sick.

Because RA is an invisible illness, it adds to the distress of our minds. People are judgmental. If you don’t look sick then you must not be sick according to the court of public opinion. You get glared at for parking in a handicap parking space even though your doctor and the government has declared you are ill enough to have that rear view mirror place card. One day we go from being non-functional, curled up in bed unable to participate in life to being able to go out in public the next day, literally. Many times spouses, family, friends don’t understand the peaks and valleys of illness and it just makes the mental aspect of this disease much tougher. All these changes often lead to chronic depression. But what about when the disease actually affects your mind beyond depression?  In your head you said the right word or leave out part of the story but it didn’t come out of your mouth that way and the person you are trying to converse with looks at you with a quirked eyebrow and either laughs, corrects you, or silently judges you for being on too many meds. Brain fog is a real aspect of many chronic illnesses especially those in the autoimmune family. In addition, worry creeps in. You might worry about how far will this illness go, to what degree you will be physically handicapped, if you can bear the pain, how you can pay all the medical bills, and if it’s just too much for others to handle.

Although we have little control over what the disease does to our bodies and limited control over what the disease does to our minds, I do feel we have full control over what the disease does to our spirit.  Nurses are taught early in our course work that you treat the whole person: body, mind, spirit but our main focus is on the body. We educate and help with understanding also which deals with the mind, but not as much as focusing on the physical aliments of disease. Somewhere along the way though, addressing the spirit has been lost which has been in part perpetuated with societal views regarding “religion”. Nurses have become afraid to broach the subject of spirit with patients because they don’t want to offend. I can also see on the flip-side as a patient, we sometimes fail to address our spirit when we are ill because the physical and mental aspects of disease keep us so preoccupied.

I believe that disease can wreck your body and it can have its toll on your mind but it cannot touch your spirit unless you allow it. This isn’t a disease for wimps; it will either make you stronger or it will crush you. As you think about your disease and all the things it has taken from you, do you ever consider the strength of spirit that you might have found while battling illness? I have. I know that it’s not my own strength, but God’s. I cannot imagine traveling this road of illness without God. When others don’t understand God does. So many times I hear from rheumatoid disease patients that “no one understands; no one cares”. God cares! He didn’t do this to you. So many people are angry at God and blaming God or saying God has checked out and doesn’t care, but I am here to assure you there is a God and he loves me and he loves you! We are the ones who “check out”. God is always there. He will give you a strength of spirit you never had before: His Spirit.

Jesus says in Matthew 11:28 of the Bible “Come to me all you who are weary and heavy burdened and I will give you rest”. There are none more weary or heavy burdened than the chronically ill. The enemy would have you believe you are defeated, but God who is the creator of all, says otherwise. You are only defeated if you allow it. Treat your body and your mind, but don’t forget about your spirit. Having strength in spirit can help you handle the challenges presented to your body and mind.

RA: Understanding Our Similarities & Differences

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A few days ago I wrote a blog about the stages of grief one goes through when diagnosed with a chronic illness and how we are all on our own path of acceptance. Someone in the phase of acceptance has a different perspective on the disease than someone who is in the anger phase. Today, I want to talk about the stages and classification of rheumatoid disease in correlation to the post on grief and acceptance. These two factors: your level of acceptance of diagnosis and the stage & classification of your disease are important to be aware of as you relate to other RA patients in your journey of treatment.

RA can be staged and classed, but doctors rarely use staging & classing to describe RA and instead use degrees of disease such as: mild to moderate or moderate to severe. I’m not sure why doctors have stepped away from the staging of RA. Perhaps it is because so many people relate staging & classification to cancer. Most of us know that Stage IV cancer is terminal. I don’t think they want us to know that rheumatoid disease can be terminal as well.  Another reason may be that we all don’t fit in perfect categories and the staging of RA is not as cut and dried as the staging for cancer. I am going to share with you the staging model and classifications for RA for your understanding; however, I do not recommend you try to pin your rheumatologist into a stage/class unless your want a defensive response. Again, rheumatologists will only classify you as mild/moderate or moderate/severe.

Per Mosby’s Medical Dictionary, Volume 4 (page 1369): There are four stages of rheumatoid disease. (See bottom of page for definitions of medical terminology.)

Stage:

  • Stage I, Early: 1) X-ray films show no evidence of destructive changes. 2) X-ray films may show evidence of osteoporosis.
  • Stage II, Moderate: 1) X-ray films show evidence of osteoporosis, possibly with slight destruction of cartilage or subchondral bone. 2) Joints are not deformed, but mobility may be limited. 3) Adjacent muscles are atrophied. 4) Extraarticular soft-tissue lesions (as nodules and tenovaginitis) may be present.
  • Stage III, Severe: 1) X-ray films show cartilage and bone destruction, as well as osteoporosis. 2) Joint deformity (such as subluxation, ulnar deviation, or hyperextension) exists but not fibrous or bony anklylosis. 4) Extraarticular soft tissue lesions (such as nodules and tenovaginitis) are often present.
  • Stage IV, Terminal: 1) Fibrous or bony ankylosis exists in addition to all criteria listed for Stage III.

Classification:

  • Class I: No loss of functional capacity.
  • Class II: Functional capacity impaired but sufficient normal activities despite joint pain or limited mobility.
  • Class III: Functional capacity adequate to perform few if any occupational or self care tasks.
  • Class IV: Patient confined to bed or wheelchair and capable of little or no self-care.

So, as you can see in reviewing the staging and classification for rheumatoid disease not everyone, maybe even you fit neatly into a category. If I were to try to apply this system to me, I’d say I’m Stage III, Class II bordering on Class III. My rheumatologist classifies my disease as moderate/severe which is a much easier, but broader category for my symptoms.

The point I am trying to make is that while we may all have disease that falls under the broad definition of rheumatoid disease, we are at different stages of acceptance of our illness, different stages of disease, and different classification of disease. One of the common things I see in online RA chat groups is the need for validation of symptomology and continual comparison of symptoms. This leads to confusion as responses come forth denying the same symptoms, confirming your symptoms, or warning you of advanced symptoms. The group of diseases under autoimmune disorders is so broad that it’s going to be rare for you to find someone that has the exact set of symptoms that you do. Just remember when you are chatting with a fellow patient in the Rheumatologists office or in face-to-face support group, or online support group that just because you don’t have the symptoms someone else has does not invalidate your diagnosis or make your symptoms insignificant. It’s hard enough knowing the general public, some medical team members, friends, and family do not understand this disease. We need to be aware that under the umbrella of rheumatoid disease we have as many similarities as we do differences! 🙂

I hope you’ve found this post to have helped you understand your disease a little bit better. God didn’t make us all the same. Our disease symptoms are not all the same. Although it’s great to discuss your symptoms, your feelings, and your diagnosis with other patients remember that you are a unique individual and your treatment plan should be geared toward your uniqueness. Only YOU know how you feel physically, mentally, emotionally, and spiritually.

Definitions of Medical terms:

  • Osteoporosis – thinning of the bones resulting in loss of bone mass due to loss of calcium and bone protein.
  • Subchondral bone – the layer of bone just below the cartilage in a joint.
  • Atrophied – a wasting away or decrease in size.
  • Extraarticular -outside the joint.
  • Tenovaginitis – inflammation of the tendon sheath or the lining of the tendon.
  • Ankylosis: immobility of a joint due to bone fusion.

The Grief Aspect of Chronic Illness

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Anytime one experiences a loss or a sudden change in life grief is to follow.  It’s a natural human experience but it makes  us uncomfortable. We don’t speak of it in our society. When someone you love dies, you are expected to “get over it” after the funeral and resume what appears to be a normal life while grieving is done in private. When you are the one dying you are expected to put on a brave face. In all actuality, grief may stay with us for days, weeks months or years or a lifetime. There is no set standard on how much time it should take to grieve. Grief associated with loss of a loved one is more accepted in society, but what about the grief that comes with the loss of a job, leaving home, the breakup of a relationship, or the onset of a fatal or chronic illness? Sometimes we don’t even acknowledge that we are grieving over these circumstances.

A lot of people diagnosed with rheumatoid arthritis don’t know what word to put on the way they are feeling. Some will admit to being afraid of the unknown but few acknowledge grief and spend a lot of time in unresolved grief struggling to get their old lives back. Illness is difficult to accept. It’s okay to grieve over those changes in your life, but it’s important not to get stuck in the mire of yearning for things to be different.

A well known psychology expert on grief, Dr. Elizabeth Kubler Ross, identified five stages of grief and/or dying during her career. These stages are universal to any loss or sudden change that brings upheaval to one’s life. Depending on the type of loss or change some can move through these stages quickly coming to complete acceptance while others move back and forth through these stages throughout a lifetime. No one way is right or wrong, but in order to heal our grieving hearts we do need to acknowledge we are grievingAs you read through the five stages identified by Ross, please apply these to yourself and your grief regarding RA.

Five Stages of Grief or Dying

  1. Denial – The loss has not yet sunk in and is not likely to be acknowledged.
  2. Anger – Hostile, aggressive, and personal expression of anger may be directed at the situation in general, towards yourself, toward significant others, toward the one that is dying or has died, and members of the healthcare community.
  3. Bargaining – An attempt to make a deal, usually with God, for another outcome.
  4. Depression – The loss is acknowledged, but profound despair is often felt.
  5. Acceptance – Recognition that one must continue with their life.

Wouldn’t it be nice if we could just bound through steps 1-5 and be finished with the icky business of grieving? I doesn’t work that way. Grieving can’t be forced nor should be be. It’s an individual process that should be free of judgement from others. The way we grieve is a individual process yet we do have all five of these steps in common. It’s perfectly normal to move back and forth through these stages. Also, stop to consider that your spouse, children, other loved ones and friends may also be grieving along with you over your loss of health and their stage of grief may not be the same as yours and they may or may not come to acceptance with you. We need to be respectful of each other and not expect others to jump through these stages like hoops.

I grieve the loss of my health. When I was first diagnosed with S-RA I didn’t want to believe it. The doctor had to be wrong (denial). Within three months, I had scheduled an appointment with a second rheumatologist for another opinion. While I waited for this second specialists appointments I was angry that I was being dealt a chronic illness, angry that the first doctor appeared to eager to jump into chemotherapy treatment when my mind was reeling, and angry at my own body for turning against itself (anger). Since that diagnosis and the confirmation by a second opinion, I can’t tell you how many times I’ve cried out to God (bargaining) to take this illness from me and I’d do whatever He wanted.  I’ve also experienced depression as realized I can’t make this illness go away and there have been moments I’ve wanted to die just to make the pain go away (depression). In the last four years I’ve bounced from one aspect of stages 1-5 to another like a ping pong ball. Most recently I’ve been so angry about the loss of financial freedom and hardship that comes with struggling over paying for medical care that I threw myself into a flare. I may light on stage 5 for a bit, but it’s not lasting because something will invariably go awry outside my scope of control with sends be back into one of the other stages. I won’t be dishonest and say I’ve got this all worked out because I don’t. I’m human.

Having been a oncology nurse most of my nursing career, I did see many terminal cancer patients come to acceptance at stage 5 and I saw the peace that washed over their being when they finally knew they couldn’t win the battle so they accepted it and just worked on their relationships for the rest of the time they had left. I think it takes great courage to get to acceptance. The patients I saw reach acceptance were not uniquely strong or wracked with regrets. They were at peace with themselves, family and God. They chose to put their circumstances in the hands of their creator and just loved those around them until they drew their last breaths. They would often tell me how “blessed” they felt. I feel privileged to have been a witness to their experience. I also saw the flip side of that where patients remained in denial or in anger and fought for every breath as they were dying. They were not at peace and it was for me to see them pass without acceptance, but they could not help how they felt. You can’t force yourself into these stages, but being aware of them does help you understand yourself a bit better when you are struggling with illness.

Dr. Ross once said, “You will not grow if you sit in a beautiful flower garden, and somebody brings you gorgeous food on a silver platter. But you will grow if you are sick, if you are in pain, if you experience losses, and if you do not put your head in the sand, but take the pain and learn to accept it, not as a curse or a punishment, but as a gift to you with a very, very specific purpose,”. I didn’t understand the meaning of that quote when I first studied Dr. Ross’s work, but I do now after witnessing it first hand in the lives of others and now in my own life. RA is a terrible disease, but it is not a life sentence into a world of hell unless you make it that way. There are many things I’ve learned along the journey that I would have missed otherwise. How boring life would be if it never changed! RA has slowed me down so that I can have a relationship with God that I was once too busy to cultivate. I really see people now whereas before RA they were just a blur passing me by.  I won’t ever get my old life back and I don’t want it back. I’m still grieving the loss of health and sometimes the challenges are frustrating, but Dr. Ross was right; I’m growing and I have hope.

 

Sero-Negative Rheumatoid Arthritis

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I joined an online support group some 4,000 members strong for RA last week and I was astounded at the number of posts in which a member says, “I don’t understand why my joints hurt so much. All my labs were normal” followed by some indication that they have been told they do not have RA. This frustrates me because these new patients are led to believe by their medical team, which sometimes includes a rheumatologist, that their symptoms are all in their heads when the pain and fatigue are very real. I just don’t understand why more doctors do not recognize Sero-Negative Rheumatoid Arthritis (S-RA). The Arthritis Foundation calculates that at least 20-30% of RA patients fall into the S-RA category, meaning they have a normal blood Rheumatoid  Factor and ANA. These blood lab tests alone should never been a used to diagnose this disease because they are misleading. There is a good percentage of healthy adults who have a positive Rheumatoid Factor; which renders the result inconclusive. I’ve had S-RA for 4 years now. Blood samples drawn throughout this four-year period all have a negative blood Rheumatoid Factor and a normal ANA; however, my CRP and ESR have always been elevated and keep climbing without being checked by any treatment to date.

I wanted to write this blog about S-RA so that the layperson will know what goes into diagnosing this category of autoimmune disease and to try to sort fact from the fiction some of you have been led to believe. S-RA is treated just like RA. Your treatment plan could be delayed by years resulting in permanent joint damage if not diagnosed early.

Labs – Your physician may order these labs on your first appointment for diagnosis and afterwards to monitor your disease. Don’t be afraid to look at your lab reports. They are laid out fairly simple with a normal range so you can tell which of your labs results are abnormal. With the use of the internet you can find more information about your lab results that is written in laymen terms.

  • The Rheumatoid Factor is no longer the gold standard used to diagnose RA. It is inconclusive. As I mentioned above, healthy individuals sometimes test positive for the RA Factor and science does not know why. Conversely, there are about 20-30% of the rheumatoid patient population who have a negative Rheumatoid Factor but indeed to have RA. The rheumatoid factor is a protein in the blood that is made by the autoimmune system.
  • The ANA (Anti-Nuclear Antibodies) blood test shows the number of these antibodies that you have in your blood. This test is also inconclusive as healthy people have tested with elevated ANA for no reason. The antibodies are made by the autoimmune system. When it is elevated it can signal lupus, rheumatoid arthritis or scleroderma but it should not be used alone as a diagnostic tool.
  • CRP (C-Reactive Protein) is a blood test for this protein that appears in high numbers when there is inflammation in the body.  The inflammatory response isn’t specified to autoimmune disease but can be caused by a injury, post surgery, or due to cardiac disease.
  • ESR (Erythrocyte Sedimentation Rate) or Sed Rate is another lab test that measures inflammation in the body. Is not a stand alone test, but is used with other tests to support a diagnosis. This is a test in which your blood sample is placed in a small tube for 1 hour. It measures the rate at which erythrocytes (red blood cells) fall in the tube. Inflammation causes the erythrocytes to clump together which causes them to fall at a faster rate. The Sed Rate measures how fast the erythrocytes fall to the bottom of the tube. The higher the number, the more inflammation there is in the body.
  • Anti-CCP or ACCP (Anti-Cyclic Citrullinated  Peptide) is an antibody that can be found in the blood that is a better marker for RA than the Rheumatoid Factor. A patient can have a negative Rheumatoid Factor but still be positive for the ACCP. However, again, this is not a definitive test. People are genetically predisposition to have this antibody while others do not. There is a strong correlation that those who do have the antibody present in their blood do have RA.
  • Vectra DA – The Vectra DA blood test is a newer test that measures 12 different bio-markers in the blood and computes a single sore for these markers that range in categories of high disease activity, moderate disease activity or low disease activity. It can be used by your doctor over time to see if there is an overall improvement or worsening of your disease. Again, this disease may not be conclusive for S-RA.

Radiology – X-rays, CAT Scans, MRI’s, Ultrasound, and Bone Scans can be used in the diagnosis of RA. When used in combination with lab testing they help your physician make a better diagnosis.

  • X-Rays of Bones – A routine x-ray can be helpful if you already have a gross deformity of joints but it is not practical in picking up fine bone erosion associated with RA. In fact, the radiologist reading they film may mistakenly see osteoarthritis changes (OA) which can occur secondary to RA.
  • Joint Ultrasound – Ultrasound of the effected joint can show damage before a routine x-ray.
  • CAT Scan – CAT Scans are more powerful than xrays. The CAT Scan takes pictures in slices either vertically or horizontally and can show details within these layers that are not available on xray.
  • MRI Scan – A MRI uses radio-frequencies, strong magnets, and a computer to show detailed images of body structures.
  • DEXA Scan or Bone Density Test – A test that is used to diagnose the likelihood or presence of osteopenia or osteoperosis.
  • Bone Scintigram – This is a nuclear bone test in which a radio-isotope is injected in the patient. Later, the patient is scanned with gamma camera and areas of bone that have taken up the isotope are considered to be in a state intense remodeling which is not seen in osteoporosis but seen in rheumatoid arthritis and bone cancer.

Medical History – Your medical history is the most important aspect of diagnosing S-RA.  Be perfectly honest and concise about the onset of symptoms, the areas effected, how your feel physically upon awakening, during the day, and at bedtime. The documents that a rheumatologist give you to fill out prior to your first appointment can seem intrusive and exasperatingly long, but be sure to fill out the documents fully and honestly.

Physical Examination – If the rheumatologist you are seeing does not do a physical examination in which they touch your joints and ask you which ones are painful then see a different rheumatologist. A doctor cannot make a diagnosis without doing this type of physical examination. It is very important you be perfectly honest about which joints are irritated and how they feel because your treatment will be based upon these findings. If you over-exaggerate your symptoms because you a desperate to be believed you can come across as insincere causing your physician to doubt your disease claim and considering you to be a “drug seeker”. If you come off stoic and minimize the symptoms you are having then your doctor may miss diagnosing the stage your disease is in and not be aggressive enough with the medical treatment plan.

It takes more than a few lab tests to arrive at the diagnosis of S-RA. If your doctor hasn’t ran some of these tests I mentioned, you may ask them about these exams. Don’t hesitate to ask your doctor explain what test result means or why they are or are not ordering certain tests. By no means have I included all the tests that can be done. Before starting in biological agent there are a slew of labs that need to be done to make sure that you are not compromised with tuberculosis, hepatitis, or other diseases that could be fatal while on these powerful medications. There are also routine lab tests that are done frequently like a CBC – Complete Blood Count, which is a basic measure of health.

Educate yourself. You will find that the ignorance among general health care workers such as nursing staff and general practitioners can be profound. In many cases RA patients end up educating their health care teams about RA. Also know that you are not alone. The Rheumatoid Patient Foundation has published a white paper with their findings after polling RA patients which can give you some leverage in educating  health care providers, family and friends. http://rheum4us.org/wp-content/uploads/2013/04/Unmasking-Rheumatoid-Disease-The-Patient-Experience-of-Rheumatoid-Arthritis-White-Paper.pdf

I would urge anyone who has joint pain that had a sudden onset and has persisted regardless of your rheumatoid factor and ANA lab work to seek a second opinion. You may be in the 20-30% of patients that have S-RA.